Comments for Cleft Lip & Palate Support Group http://www.cleft.org.nz Just another WordPress weblog Thu, 28 Aug 2008 15:09:23 +0000 http://wordpress.org/?v=2.6 Comment on Kenny the Courageous by Kenny Ardouin http://www.cleft.org.nz/kenny-the-courageous/#comment-1918 Kenny Ardouin Mon, 25 Aug 2008 08:57:55 +0000 http://www.cleft.org.nz/?p=154#comment-1918 Hi all, Yes, please do have a look at the Cleft Kids New Zealand website and let us know what you think, and if you have a story you would like to share on the website or would like to be a part of it in some other way, then please let me know - my contact details are available on the website - www.cleftkids.org.nz. Hi all,

Yes, please do have a look at the Cleft Kids New Zealand website and let us know what you think, and if you have a story you would like to share on the website or would like to be a part of it in some other way, then please let me know - my contact details are available on the website - http://www.cleftkids.org.nz.

]]> Comment on Kenny the Courageous by Susan Frear http://www.cleft.org.nz/kenny-the-courageous/#comment-1917 Susan Frear Mon, 25 Aug 2008 01:45:16 +0000 http://www.cleft.org.nz/?p=154#comment-1917 You can start logging your ideas here. A think tank of innovative ideas that you can help dream up. You can start logging your ideas here. A think tank of innovative ideas that you can help dream up.

]]> Comment on Genetics and Recurrence by Irene http://www.cleft.org.nz/genetics/#comment-1916 Irene Sun, 24 Aug 2008 04:03:35 +0000 http://www.cleft.org.nz/?page_id=4#comment-1916 Hi! I have a son who was born with a cleft palate. I knew that something was wrong when he was born, but no one noticed until he was 2 months old. I said that his uvula was missing and a nurse told me that it would grown in? Very odd I thought. His pediatrician was like he has a cleft palate, and told me where to go to get help to fix it. The fact that when I left the hospital when I gave birth and no medical professional noticed irked me the most. He just had his surgery on the 5th of August, and he is great. He also had tubes put in his ears since it affected his hearing and prior to his surgery he did wear a hearing aid.He went for hearing tests once a month to see if it got better. He still has a spot that is left that is taking longer to heal, but I wouldn't change him for a thing in the world. I am now 8 weeks pregnant, and after talking to numerous doctors/specialist, this cleft palate does not run on either side of the family and is a total fluke. They said that it was environmental and that since my son had no other symptom, like autism for example, that my next child has a 2 to 3% chance of having any other kind of cleft. If there was another symptom (near sighted) it would spike up to 50%. To people who know that they are having a child with a cleft palate or lip. It will be stressful, but all you want in the end is for your child to be ok. Ethan is great and learning how his mouth works all over again. He is surprised with all the new sounds that he can make. He might need a speech therapist when he is older, but for the next year I will not have to worry about it. And it is only a 20% chance that he will need one. So to all the parents, just be patient even though doctors appointments are stressful, in the end it is all worth it. Hi!

I have a son who was born with a cleft palate. I knew that something was wrong when he was born, but no one noticed until he was 2 months old. I said that his uvula was missing and a nurse told me that it would grown in? Very odd I thought. His pediatrician was like he has a cleft palate, and told me where to go to get help to fix it. The fact that when I left the hospital when I gave birth and no medical professional noticed irked me the most.

He just had his surgery on the 5th of August, and he is great. He also had tubes put in his ears since it affected his hearing and prior to his surgery he did wear a hearing aid.He went for hearing tests once a month to see if it got better. He still has a spot that is left that is taking longer to heal, but I wouldn’t change him for a thing in the world.

I am now 8 weeks pregnant, and after talking to numerous doctors/specialist, this cleft palate does not run on either side of the family and is a total fluke. They said that it was environmental and that since my son had no other symptom, like autism for example, that my next child has a 2 to 3% chance of having any other kind of cleft. If there was another symptom (near sighted) it would spike up to 50%.

To people who know that they are having a child with a cleft palate or lip. It will be stressful, but all you want in the end is for your child to be ok. Ethan is great and learning how his mouth works all over again. He is surprised with all the new sounds that he can make. He might need a speech therapist when he is older, but for the next year I will not have to worry about it. And it is only a 20% chance that he will need one.

So to all the parents, just be patient even though doctors appointments are stressful, in the end it is all worth it.

]]> Comment on Genetics and Recurrence by Melissa http://www.cleft.org.nz/genetics/#comment-1908 Melissa Wed, 20 Aug 2008 01:37:02 +0000 http://www.cleft.org.nz/?page_id=4#comment-1908 Wow, I hope that there was another reason why Sonia terminated her pregnancy. My son is 3 & 1/2 yrs old & was born w/a cleft lip & palate. He underwent surgery to repair & still has another surgery to go when he is 7-9 yrs old. He looks great & is the joy of our lives. When we mention something about it to people they are usually like, "What are you talking about, whats wrong w/his lip?" His surgeons did a fantastic job. At first it didnt look so great, but w/time it has come to look much better. We are currently expecting baby #2 & pray that we dont have to go thru that stress again, but we would do it all over again if we had to. I know there is speculation of enviornmental factors as well as genetics involved. There was no occurrrence of clefts in either of our families. However, I work in the dental field & about a year before I found out I was pregnant, a co-worker had a child born w/cleft lip & palate. This makes me wonder about enviornmental affects in the workplace on unborn children. Wow, I hope that there was another reason why Sonia terminated her pregnancy. My son is 3 & 1/2 yrs old & was born w/a cleft lip & palate. He underwent surgery to repair & still has another surgery to go when he is 7-9 yrs old. He looks great & is the joy of our lives. When we mention something about it to people they are usually like, “What are you talking about, whats wrong w/his lip?” His surgeons did a fantastic job. At first it didnt look so great, but w/time it has come to look much better. We are currently expecting baby #2 & pray that we dont have to go thru that stress again, but we would do it all over again if we had to. I know there is speculation of enviornmental factors as well as genetics involved. There was no occurrrence of clefts in either of our families. However, I work in the dental field & about a year before I found out I was pregnant, a co-worker had a child born w/cleft lip & palate. This makes me wonder about enviornmental affects in the workplace on unborn children.

]]> Comment on Cleft Facts by Chelsea http://www.cleft.org.nz/cleft-facts/#comment-1904 Chelsea Wed, 13 Aug 2008 01:01:03 +0000 http://www.cleft.org.nz/?page_id=3#comment-1904 Hi there, My name is chelsea and i'm a student at the university of canterbury studying early childhood teaching. I have just began a course assignemnt on inclusive education, We have to choose a disability or impairement and create a programme that is "iINCLUSIVE for ALL CHILDREN INVOLVED." I have chosen cleft lip and palate as my 'impairement' and am going to build a portfolio that creates an inclusive environment for the children. If there is any information you could give me that would help build an inclusive environment for children (especially including the child with a cleft lip & palate) it would be much appreciated. Many thanks, Chelsea Murdoch cmu34@student.canterbury.ac.nz is my email. Hi there, My name is chelsea and i’m a student at the university of canterbury studying early childhood teaching.
I have just began a course assignemnt on inclusive education, We have to choose a disability or impairement and create a programme that is “iINCLUSIVE for ALL CHILDREN INVOLVED.”

I have chosen cleft lip and palate as my ‘impairement’ and am going to build a portfolio that creates an inclusive environment for the children.

If there is any information you could give me that would help build an inclusive environment for children (especially including the child with a cleft lip & palate) it would be much appreciated.

Many thanks, Chelsea Murdoch

cmu34@student.canterbury.ac.nz is my email.

]]> Comment on Genetics and Recurrence by Adil http://www.cleft.org.nz/genetics/#comment-1877 Adil Wed, 06 Aug 2008 10:41:59 +0000 http://www.cleft.org.nz/?page_id=4#comment-1877 Hi.. My name is Adil and my wife is now 24 weeks pregnant with our second child. Last week we did a 3D scan and we were informed that our child has a small cleft on the upper side of the left lip. I read over the internet that part of the cause is genetic, and only later I found out that my dad's uncle had cleft lip (I didn't get a chance to meet him since he passed away when my dad was still young). Notwithstanding this, my wife and I remain positive and hope for miracle to happen between now and the delivery... To be honest, I was disturbed by Sonia's termination of her pregnancy, but that was her choice. For me and my wife, we promise ourselves that whatever happen, we will give unconditional love to our child as much as our first one... Regards, Adil Affandy Othman adil_affandy@yahoo.com Hi..

My name is Adil and my wife is now 24 weeks pregnant with our second child. Last week we did a 3D scan and we were informed that our child has a small cleft on the upper side of the left lip. I read over the internet that part of the cause is genetic, and only later I found out that my dad’s uncle had cleft lip (I didn’t get a chance to meet him since he passed away when my dad was still young).

Notwithstanding this, my wife and I remain positive and hope for miracle to happen between now and the delivery…

To be honest, I was disturbed by Sonia’s termination of her pregnancy, but that was her choice. For me and my wife, we promise ourselves that whatever happen, we will give unconditional love to our child as much as our first one…

Regards,

Adil Affandy Othman
adil_affandy@yahoo.com

]]> Comment on Genetics and Recurrence by Sally http://www.cleft.org.nz/genetics/#comment-1869 Sally Mon, 04 Aug 2008 23:55:18 +0000 http://www.cleft.org.nz/?page_id=4#comment-1869 SONIA: Perhaps you didn't have to terminate your pregnancy because of a cleft lip. Did you consider keeping your child, maybe putting it up for adoption.....for a chance at a REAL mothers love?? It wasn't your baby's fault it had a cleft lip/ palate. Don't get pregnant again. Don't put any child up to your unreasonable standards. SONIA:

Perhaps you didn’t have to terminate your pregnancy because of a cleft lip. Did you consider keeping your child, maybe putting it up for adoption…..for a chance at a REAL mothers love?? It wasn’t your baby’s fault it had a cleft lip/ palate. Don’t get pregnant again. Don’t put any child up to your unreasonable standards.

]]> Comment on Genetics and Recurrence by Barbara http://www.cleft.org.nz/genetics/#comment-1867 Barbara Mon, 04 Aug 2008 04:05:33 +0000 http://www.cleft.org.nz/?page_id=4#comment-1867 There is no set rule as to whether or not you will have another cleft baby. It may seem daunting at first but having a cleft doesnt stop you having a great life - it is only a physical disability which can be fixed. If you are concerned you should check with a geneticist. But they cant guarantee you a "perfect"baby. There is no set rule as to whether or not you will have another cleft baby. It may seem daunting at first but having a cleft doesnt stop you having a great life - it is only a physical disability which can be fixed. If you are concerned you should check with a geneticist. But they cant guarantee you a “perfect”baby.

]]> Comment on Genetics and Recurrence by Sonia http://www.cleft.org.nz/genetics/#comment-1851 Sonia Thu, 24 Jul 2008 10:07:47 +0000 http://www.cleft.org.nz/?page_id=4#comment-1851 Hi, I had to terminate my 21 week old pregnancy because the ultra sound detected a bilateral cleft lip and palate. Please let me know what is the chance of this to recur and if there is any thing i can do to prevent the same in my future pregnancies. Thanks. Hi,
I had to terminate my 21 week old pregnancy because the ultra sound detected a bilateral cleft lip and palate. Please let me know what is the chance of this to recur and if there is any thing i can do to prevent the same in my future pregnancies. Thanks.

]]> Comment on Orthodontic Treatment by Barbara http://www.cleft.org.nz/our-child/teeth/#comment-1842 Barbara Wed, 23 Jul 2008 01:11:54 +0000 http://www.cleft.org.nz/?page_id=21#comment-1842 Hi Marilyn It does get harder as the children get older. Personally, I think just being open with them and telling them what is going to happen is the best thing you can do. My daughter hasnt had the bone graft surgery yet but I believe it is quite hard on them. They are usually in for a few days as they have to take a small piece of bone from the hip and put it in the gum. If you would like to talk to someone about this please call the support group on 0800 4CLEFT and we will organise a support parent who has been there to talk it through with you. Hope this helps Barbara Hi Marilyn

It does get harder as the children get older. Personally, I think just being open with them and telling them what is going to happen is the best thing you can do.

My daughter hasnt had the bone graft surgery yet but I believe it is quite hard on them. They are usually in for a few days as they have to take a small piece of bone from the hip and put it in the gum.

If you would like to talk to someone about this please call the support group on 0800 4CLEFT and we will organise a support parent who has been there to talk it through with you.

Hope this helps
Barbara

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